|07-23-2012, 06:03 PM||#1 (permalink)|
Join Date: Jan 2008
Location: New England, USA
Resources provided to new parents of deaf/hoh children in MA
This isn't CI-specific, and I've posted much of this in years past before this sub forum existed as a resource, but I wanted to step back the decision process well before CI's come into the picture to the point where most people have their first questions and share what our state provides parents of a newly diagnosed deaf or hoh child. I think guidelines vary considerably by state. And I know that even in our state, the type and quality of the resources you have access to can vary even further by town.
We were really lucky in that we found ourselves awash in great resources and options from the start. The strongest initial influences were from the state, in terms of the guidelines making EI and MASS Comm. for the Deaf services (such as a Deaf Mentor and Family Sign) available to us immediately, even before any formal diagnosis or assessment, and from Children's Hospital's Deaf & HOH Program, which is such an outspoken advocate for bilingual education for the deaf.
In MA, if a child is flagged in the universal newborn screening program, this document explains what services begin, and a team is convened to provide access to the resources chosen by parents. The laws and regs. /criteria are outlined here. For us, our initial committee was of our choosing, and consisted of a pediatrician specializing in intl adoption, an EI SLP fluent in ASL, our Deaf mentor, the director of the Deaf and HOH program at Children's Hospital, and later the head of early ed at my daughter's school.
Early intervention and audiology referrals are made as a result of this test, or at the request of a parent, doctor, or other professional. Every deaf child is considered at risk for language delays, you can see the criteria and milestones via the link above, and gets services without question. EI services are provided by independent companies covering specific towns. In our case, our EI provider transferred their services for the next 2 years to the grounds and resources of the bi-bi school for the deaf we chose, an hour from the borders of their catchment area, despite there being two oral-based schools for the deaf within our area; covering the cost of participating in ASL-only playgroups and parent sessions and developing our daughter's ASL language acquisition through sessions with several ASL-fluent language specialists. They pointed us to the MA Comm. for the Deaf, to the family sign program, and HOH and to local schools for the deaf, including TLC.
The MA Commission for the Deaf and HOH provides extensive resources (check out this PDF), including family sign language and a Deaf mentor to guide families further. Its staff is listed on the site, and the Commissioner is Deaf. I called the Commission directly, and they sent a massive binder of resources, signed us up for family sign, pointed us to EI, and assigned a Deaf mentor who introduced us to the local Deaf community, to ASL and working with interpreters, toured parent infant programs and all types of deaf schools with us, and helped us with our first IEP.
The initial audiology tests made at the referral of our pediatrician when we said we thought Li was not hearing led us to the Deaf & HOH Program at Children's Hospital, Boston. CH made two strong recommendations after determining that Li was profoundly deaf: 1. continue an aggressive pursuit of ASL -- language was needed immediately -- and 2. consider hearing aids. We did both. The Director of their Deaf and HOH program, who has authored several books on ASL, pointed us to TLC, a bi-bi school, for its wonderful ASL-only parent infant program for kids from 0-3, to EI, and to the Family sign program through the MA Comm for the Deaf and HOH.
This was just the start of the many resources available in those critical years between 0 - 3.
I recall that there seemed to be such a tidal wave of information at the start, and no one seemed willing to give their opinions, everyone left the decision-making up to us. That baffled me at first, but looking back, I realize that this was the best approach possible because there is no one right path for every deaf child, and we had to work hard -- and still do -- to figure out which was and is best for our daughter. And one thing we have to remind ourselves is that we always have to keep a careful eye on our daughter and how she is doing, adapting, and make decisions based on her responses today, and not hold to some philosophical ideal we may have decided years ago.